Am I wrong about my symptoms being Celiac?

[tygerlily]

Hi all,

I’ve been dealing with unexplained GI symptoms for almost 3 months. I am 19 years old, assigned female at birth, 123 lbs, 5’0. Around 10-12 years ago I suffered from chronic constipation which was solved by implementing a bathroom plan and taking one serving of Miralax every day for several years. I didn’t experience any negative GI symptoms after that for many years. When I was 15 I started getting unexplained vertigo that received a migraine diagnosis and a prescription of Rizatriptan. At 18 I started getting recurring acid reflux, went to see a doctor, and got prescribed omeprazole. This made sense at the time because my mother has GERD and it runs in my family. I took omeprazole every day until a couple weeks ago. Other than that I can’t remember any significant GI symptoms I’ve had other than bloating after eating carb-heavy foods (always went away within a few hours) and very occasionally I would wake up in the middle of the night with a terrible stomachache and diarrhea. 

 

Fast forward to March of this year. My bowel movements became more difficult to pass and would be small and lumpy. This was accompanied by bloating, feeling like there was a rock in my stomach, and burning stomach pain that would improve with eating. I went to urgent care, got abdominal x-rays done, showed a moderate amount of stool in my colon, and was told to take 6 servings of Miralax for 3 days. I also got a CBC done and it showed my hemoglobin levels slightly low. I was told that “everyone is a little bit anemic” and to eat more iron. The Miralax solved the bloating but it came back soon after. When it came back this was around the time I was due for my period, so I thought it was fluid retention due to PMS. I also have PMDD, which is where my brain overreacts to the hormone changes occurring during the menstrual cycle. It causes a lot of stress, anxiety, and depression in the two weeks before I start menstruating. My period was two days late, which was unusual for me since my periods are usually very regular, but I chocked it up to the stress my PMDD was causing me. The bloating didn’t go away after my period ended, though. My mother suggested it was due to constipation and gave me an enema. The enema solved the bloating, but again it came back soon after, along with the constipation. 

Ever since early March I’ve been consistently dealing with constipation, bloating, nausea, acid reflux, headaches, brain fog, an itchy skin rash, depression, and anxiety, along with symptoms of iron deficiency anemia like shortness of breath, heart palpitations, chest pain, dizziness, weakness, and pale skin. At first I didn’t think my symptoms tracked with any specific foods. I thought it was SIBO. This is what I told my gastroenterologist. She ordered blood tests, including tTG-IgA and IgG.

In the evening before getting my blood tested, I made a microwave meal that was labeled as gluten-free. I thought that was interesting and decided to watch how my body reacts to it to see if I have a gluten sensitivity. I ate the meal and a couple hours later I realized that I had virtually no symptoms. Normally after eating a meal I experience a headache, stomachache, and severe bloating, sometimes followed by nausea and acid reflux. I didn’t experience any of that after eating this meal—maybe a little bit of bloating. That was the last thing I ate before getting my blood tested. 

 

My tTG-IgA and IgG levels were normal. They were both <1.3, so nowhere near even borderline positive. My IgA was 100–on the lower level of normal (lowest normal reading is 85). This was discouraging, especially since I experienced relief after eating that gluten-free meal for the first time since these GI issues started. I’ve read that blood tests can be negative even with Celiac disease, but would they really be that negative? I have an endoscopy and colonoscopy scheduled, but not until October. I’m currently trying to get a sooner date scheduled. I’m just wondering if I’m getting the wrong idea about having Celiac disease with my blood tests being the way that they are. Are there any conditions that mimic Celiac disease, down to the gluten sensitivity and relief from symptoms when eating gluten-free? Could it still be SIBO? I do remember having an increased reaction when eating onions a few months back, but I don’t know if that’s still the case as I have been avoiding onions since that incident. 

I’ve tried to be as thorough as I can, but if I am missing anything please let me know. I have no family history of Celiac disease. My periods have been irregular the past few months. I just got off of my most recent period today, but it was 4 days late.  I do have symptoms of malnutrition and malabsorption. I have also experienced early satiety (not uncomfortably full, but feeling really hungry and then the hunger completely disappearing after one bite of food), loss of appetite, weight loss, dry skin and hair, trouble regulating body temperature, etc…

 

Thanks in advance if you read through all this!

[tygerlily]

Oh! I forgot to mention that I’ve been dealing with chronic fatigue long before this all started—months of noticeable fatigue to maybe years of it just written off as “teenager things.”

[trents]

Welcome to the forum, tygerlily!

Your symptoms scream of celiac disease but you could also have NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms. There is no reliable test for NCGS. Celiac disease must first be ruled out. NCGS is 10x more common than celiac disease. NCGS does not cause blunted small bowel villi as does celiac disease. But with the anemia I would lean toward celiac disease because celiac disease's damage to the small bowel villi typically causes vitamin and mineral deficiencies (absorption efficiency is negatively affected). Some experts believe NCGS can be a precursor to celiac disease and he more stories like yours I read on this forum the more I believe they may not be distinct gluten disorders but are on the same spectrum.

One thing I would offer is that it would be good to get more extensive antibody testing done. You had total IGA, tTG-IGA and IGG. That's more than most physicians will order but there are still more that could have been run. Individuals can have atypical immune system reactions that, even though they do have celiac disease, don't trip positives for the primary antibody tests. Here is a primer outlining the full gamut of antibody tests that can be done: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Since your endoscopy/biopsy is not for another five months you have the option of trialing a gluten free diet to see if your symptoms improve. At the end of the day, whether you have celiac disease or NCGS the antidote is the same, namely, complete elimination of gluten from your diet. According to the Mayo Clinic guidelines for a pre endoscopy/biopsy gluten challenge, you should get valid results as long as you go back on regular amounts of gluten within 2 weeks of the procedure. They define "regular amounts of gluten" as the daily consumption of 2 slices of wheat bread or the gluten equivalent. Here is a primer for getting off on the right foot when starting the gluten-free lifestyle:

Just a word of warning, though. Once you have been on a gluten free diet for several months you will likely find your reactions to gluten when you go back on it are more intense. Hope all this helps.

[tygerlily]

Thanks so much for the reply, Trent! Thank you for being so detailed and informative.

Maybe since my symptoms are so (relatively) new I don't have enough antibodies to trip the tests I was given. Maybe I'm so young my immune system can still suppress them or something. Either way, I agree with what you're saying about NCGS possibly being a precursor to Celiac disease and feel like I can apply that to myself.

I also didn't think of trialing a gluten-free diet while waiting for my endoscopy. I tend to focus on one thing (scheduling my procedure sooner) so hard that I forget about other options. That's where outside opinions like this come in handy! I'm also a hypochondriac and sometimes avoid solutions in fear that they won't actually help but that's a whole other can of worms.

I will ask my gastroenterologist about further testing for Celiac disease. I will also probably try a gluten-free diet whether I can get my procedure scheduled sooner or not. Either way, it is what helps, and it seems silly to possibly needlessly damage my intestines if there is a way to avoid it.

Thank you again for your reply and all your help!

[trents]

Just be aware that trialing a gluten-free diet will invalidate any further testing unless you go back on gluten ahead of the test (6-8 weeks before antibody testing and 2 weeks before endoscopy/biopsy). Yes, your youth can be a major player in how your body is coping with gluten. Young people's bodies resist damage better and heal faster than those or older people like me.

[tygerlily]

14 minutes ago, trents said:

Just be aware that trialing a gluten-free diet will invalidate any further testing unless you go back on gluten ahead of the test (6-8 weeks before antibody testing and 2 weeks before endoscopy/biopsy). Yes, your youth can be a major player in how your body is coping with gluten. Young people's bodies resist damage better and heal faster than those or older people like me.

That is true. I should probably wait if my doctor wants to do further blood testing. Can't get too ahead of myself, haha

It is also very reassuring to hear that young people's bodies are more resilient to things like this, especially when Celiac disease can increase your risk of cancer and things like that. The earlier I catch it, the greater of a chance my body will be able to heal and be healthy again.